RArainbow

A resource blog for young women living with (Juvenile) Rheumatoid Arthritis


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“Instructions for a bad day” and “To this day” by Shane Koyczan

Hi everyone! How are you guys doing? Hope you are all enjoying your summers/holidays wherever you are! 🙂 I apologize for my lack of blog posts lately. Work has been keeping me very busy and I sadly don’t have a lot of energy leftover to be online as much as I’d like. I tend to update my Facebook page https://www.facebook.com/rarainbowsite more often, so feel free to ‘Like’ me on there if you wish. 😉

Today I want to share a couple spoken word poems by the very talented Shane Koyczan. I first heard Shane’s poem Instructions for a bad day after the wonderful Elizabeth of The Girl With Arthritis posted it on her page…co-incidentally when I was flaring and having a bad arthritis day. As someone who loves reading and writing, I absolutely loved Shane’s poem. If I had my way, I’d make every person on earth listen to it ;). As someone whose been living with autoimmune arthritis for most of her life, this poem was especially meaningful to me. And that’s why I want to share it with you guys too. When you live with illness, there are bound to be bad days (and nights 😦 ). In the past I wrote this message specifically for persons who are new to their diagnosis of illness. I’d like to share this beautiful poem, which holds so much truth and can be very applicable to our situations. I’ve included some of my favourite lines of the poem at the end of this post.

I’ve also included another beautiful spoken word piece by Shane Koyczan titled To This Day. This one focuses on bullying and rising above it and is absolutely worth hearing. I actually feel that this should be played in schools, if it’s not being played already.

“There will be bad days. Be calm. Loosen your grip, opening each palm slowly now. Let go. Be confident. Know that now is only a moment, and that if today is as bad as it gets, understand that by tomorrow, today will have ended. Be gracious. Accept each extended hand offered, to pull you back from the somewhere you cannot escape….. Despite your instinct to say “it’s alright, I’m okay” – be honest. Say how you feel without fear or guilt, without remorse or complexity… If you think for one second no one knows what you’ve been going through; be accepting of the fact that you are wrong, that the long drawn and heavy breaths of despair have at times been felt by everyone – that pain is part of the human condition and that alone makes you a legion….So be a mirror reflecting yourself back, and remembering the times when you thought all of this was too hard and you’d never make it through. Remember the times you could have pressed quit – but you hit continue….Be the weed growing through the cracks in the cement, beautiful – because it doesn’t know it’s not supposed to grow there….If you are having a good day, be considerate. A simple smile could be the first-aid kit that someone has been looking for. If you believe with absolute honesty that you are doing everything you can – do more. There will be bad days, Times when the world weighs on you for so long it leaves you looking for an easy way out. There will be moments when the drought of joy seems unending. Instances spent pretending that everything is alright when it clearly is not, check your blind spot. See that love is still there, be patient. Every nightmare has a beginning, but every bad day has an end. Ignore what others have called you. I am calling you friend…. Everyone knows pain. We are not meant to carry it forever. We were never meant to hold it so closely, so be certain in the belief that what pain belongs to now will belong soon to then. That when someone asks you how was your day, realize that for some of us – it’s the only way we know how to say, be calm. Loosen your grip, opening each palm, slowly now – let go.”
“Instructions For A Bad Day,” written by Shane Koyczan.

I hope you guys enjoy these poems as much as I do. Feel free to leave a comment about them. Thanks guys!
Enjoy your summer!
❤ Ms. Rainbow


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Holiday party tips: Juvenile Arthritis style

Hi everyone! Christmas and New Year’s are quickly approaching and, for many ladies, this means dressing up and going out to fancy parties with friends and loved ones. As you all know, having autoimmune arthritis can really sap your energy. Personally, my arthritis is currently quite active as I’ve become allergic to both Actemra and Remicade 😦  and I’m waiting a bit before I try a new treatment. With a limited supply of energy (spoons!), spending an hour using my flat iron is not at the top of my priority list these days. But, I think we all deserve to look and feel beautiful, even if we are flaring with arthritis. Do you agree? 😉

In this post I’ve compiled some tips for looking put together and preparing for a party even if our arthritis is active and our energy is limited. I hope you’ll find them helpful. Please share any tips and tricks you have so that we can all learn together. 😉

1. Managing our hair
I’ve written a bit about hair care in the past (click here to read). If you have difficulty caring for your hair, but still want to maintain a stylish look, consider getting a haircut. It will make shampooing and styling a lot easier on the joints. Lucky for us, super-short hair and pixie cuts are very fashionable these days. This article from Marie Claire gives some pretty examples of hairstyles you can consider.

When you have arthritis, holding a blow dryer or flat iron for more than a few minutes can be a very painful experience. If you’re experiencing pain, skip the blow drying, rub a little bit of hair serum onto your hair and allow to air-dry.

I found some creative, “lazy” hairstyle ideas on Pinterest, which you can view here for some inspiration. This article from TheDailyMuse.com also lists some easy ideas for styling hair, while the Lazy Girl’s Guide to Hair Care by BeautyRiot.com gives some tips on looking stylish without too much effort.

2. Make-up
If you’re flaring, putting on make-up is probably the least of your worries. But you can still look polished even without a full face of make-up. Consider applying a little eye-liner or a dab of lipstick/tinted lip balm to brighten your face. If you need coverage on your face, think about using a tinted moisturizer or a BB cream to even out your complexion.

3. Shoes
Shoes, shoes, shoes. With the cold weather affecting many of us, this season may bring some extra joint pain and stiffness. That means wearing shoes that are supportive and comfortable, which will aid our walking and hopefully minimize potential joint damage. Now, while wearing our fabulously supportive and comfy arthritis-friendly shoes, it’s very likely that when we go to our Christmas parties the following situation is going to happen:

flats

[Hehe. How many of us can relate to the cartoon above? I want to give a huge thanks to Ms. Bianca from 80 Year Old Teenager for letting me use her drawing. She is so talented and I love her comics! :)]

But you know what? Even if you are the only girl at the party not wearing heels, make sure you rock out your comfy shoes. 😉 Opt for comfortable boots (which will not only support your ankles, but keep them warm), sandals and flats. If you need more arch support, insert insoles/supports into your shoes. Check out BarkingDogShoes.com for some cute, comfortable shoe ideas. I wrote a post on saying goodbye to high-heels a while back which you can check out here for more ideas.

4. Keep warm!
As I mentioned in the point above, the colder weather tends to affect many of us. Ensure that you dress warmly so that your joints can be comfortable. Wear layers, jackets, leggings, scarves and boots to help keep joints warm.

5. Walk with back-up pills
You never know when a flare is going to hit, so make sure you walk with some (doctor-approved) pain medication just in case you need it.

6. Go easy on the alcohol
(Please make sure you’re of legal drinking age if you do plan to consume alcohol.) If you are going to drink at a party, make sure that there will be no interaction with the medications you’re taking. We have enough on our plates without worrying that the alcohol will interact with the medications and cause more trouble for our bodies. Doctors often give warnings about consuming alcohol while taking Methotrexate, so make sure it’s safe to have a drink if you plan to do so.

7. Be confident and have fun!
accessoryYep! It might sound cheesy, but it’s true. Even though arthritis may make us feel crappy and may even hinder our abilities to groom ourselves, it doesn’t mean that we shouldn’t go out and take part in the festivities. If you are having problems styling your hair, or your hair is falling out due to side-effects of medications, or your face is puffy due to Prednisolone or you can’t wear heels and indeed find yourself being the only girl at the party wearing flat shoes….don’t worry about it. Use your limited energy to go out and have yourself a good time this holiday season. Hey, after everything we go through with our arthritis, I think we all deserve it.  😉

 

Readers, if you have any holiday tips of your own, please share them in the comments below. Thank you! 🙂

Have a wonderful holiday season everyone!
Love and best wishes,
Ms. Rainbow


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Pro Infirmis – “Because who is perfect?” campaign

Hello everyone! Today I wanted to share this amazing video which was created for International Day of Persons with Disabilities earlier this month.

The video’s description states: “Disabled mannequins will be eliciting astonished looks from passers-by on Zurich’s Bahnhofstrasse today. Between the perfect mannequins, there will be figures with scoliosis or brittle bone disease modelling the latest fashions. One will have shortened limbs; the other a malformed spine. The campaign has been devised for the International Day of Persons with Disabilities by Pro Infirmis, an organisation for the disabled. Entitled “Because who is perfect? Get closer.”, it is designed to provoke reflection on the acceptance of people with disabilities. Director Alain Gsponer has captured the campaign as a short film.”

Personally, I loved this video and everything it stands for. Our world has become seemingly obsessed with the idea of “perfection” and “perfect” bodies (whatever that may mean). So where do persons with disabilities/physical challenges/illness stand in this scenario? Not only do we have to contend with the typical pressures of weight and height which a healthy person faces – but we often have to deal with the fact that our bodies may be physically different from that of a healthy person. Some of us have joint damage, crooked limbs, wheelchairs, walking aids etc. And there is absolutely nothing wrong with that. We are fighters and we are dealing with our situations as best as we can – and I salute all of us for it.

By showcasing the mannequins with disabilities, the managers thrust these body types into the spotlight and made the statement that these bodies are worthy and beautiful. And they sure are.

Mark ZumbĂźhl of the Pro Infirmis Executive Board summarizes the heart of the campaign perfectly: “We often go chasing after ideals instead of accepting life in all its diversity. Pro Infirmis strives especially for the acceptance of disability and the inclusion of people with disabilities.”

So true, right? If we spend all our energy on these conditioned ideals, we may lose out on the beauty right around us. Every person deserves to feel beautiful and to feel accepted. I don’t know why our world has become so overly-critical about appearance and why many people enjoy being mean and putting other people down. But if people are being mean to you, please don’t listen to them. Rather, listen to yourself. If you body has been affected by illness or you were born a little different from others, what does it matter? You are still capable and you are still you. And that’s pretty beautiful. 😉

Readers, what do you think of the video? Feel free to share your opinions in the comments.

Thanks!
Ms. Rainbow


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July is Juvenile Arthritis Awareness month!

Sometimes life don’t go the way you planned
And we all have days when we just don’t understand
Searching for meaning, it’s not always easy
But your story’s not over, it’s still being told
Your sunrise is coming brighter than gold
You were young, you were free
And you dared to believe
You could be the girl
Who could change the world
Then your life took a turn
And you fell, and it hurt
But you’re still that girl
And you’re gonna change this world.

Still that girl – Britt Nicole

Hi everyone!

July has been designated Juvenile Arthritis Awareness month so I want to dedicate this post especially to all the amazing young people who live with autoimmune arthritis all over the world. For more information on Juvenile Arthritis, click here. I, along with so many of the readers of this site, was diagnosed with Juvenile Rheumatoid Arthritis/Juvenile Idiopathic Arthritis as a child, at age 7. I am now 28.

Over twenty years have passed since I was diagnosed. The strange part is that even with so many advances in kgatmedicine and technology, most persons I meet are still completely unfamiliar with this condition and think I take Panadol. (How great it’d be if that’s all we needed, right?!)When you get a chronic illness as a child, it’s almost like you enter a secret world which few people know about and won’t know about until they get a lot older – that of living with pain and sickness and the accompanying twists and turns. But we do adapt and we learn how to live life as best as we can, and I salute all of us for it.

If you have had Juvenile Arthritis for some time, then you are a pro at handling pain, blood tests, injections, infusions, pills and the nasty side-effects. Some of us have had joint surgeries and know how draining and grueling that process can be, from the pain of surgery to the tedious, painful physical therapy afterward. Most of us have been half-naked/totally naked in front of our medical teams…that’s sure fun, right? Haha. 😛 It all takes a lot of guts. That’s something a lot of grown adults have never experienced, do you know that?

So if someone ever tries to put you down, I want you to realize how amazing you are. Truly. You are TOUGH. Despite the trials we have to endure with arthritis and in the world, I want us all to remember our strength and always know how much we’re worth. Don’t ever let anyone’s lack of awareness make you feel bad. There are going to be numerous times when we feel alone in this situation, but let’s keep our heads up, keep strong and keep doing whatever we have to do in our lives.

Illness does not define a person and I want to say that it’s OKAY to have arthritis or any illness. We are still beautiful ladies and young men and we are still strong and capable of doing anything we want in life. We just have to keep fighting for what we want. Even with arthritis, we are all trying our best and accomplishing amazing things. We are all fighting. On the days when I feel weak, I think about all of you out there who are fighting for your happiness despite this illness, and it makes me fight too. I think about the kindness and compassion that is shared among the arthritis community, especially by young persons who want to make sure other young persons never feel alone, and it warms my heart.

You are all SUPER TROOPER FIGHTERS. 🙂

To all the beautiful youths who fight illness, who work through pain and press on, keep fighting and know that you are all superheroes to me. ❤

Love,
Ms. Rainbow


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Strong hands and beautiful joints

If I could tell the world just one thing
It would be that we’re all okay
And not to worry ’cause worry is wasteful
And useless in times like these
I won’t be made useless
I won’t be idle with despair
I will gather myself around my faith
For light does the darkness most fear
My hands are small, I know
But they’re not yours, they are my own
And I am never broken.

Hands – Jewel

Some of you may be familiar with the lyrics of the beautiful song “Hands” by Jewel. Though it is not intended to be about Juvenile Rheumatoid Arthritis (JRA) or other forms of autoimmune arthritis, I think it can apply very well to our situations. Worrying is part of living with illness, but we often reach a point where we realize that we cannot control what’s happening. And from there, we learn to accept and make the best of our situations. The lyrics of the song also apply literally, because when we get Rheumatoid Arthritis our hands are often affected. And that’s what I want to speak about today, among other things.

How many of you reading this have arthritis in your hands? How many of you have joint “deformities” as a result of Juvenile Rheumatoid Arthritis or other types of autoimmune arthritis?

I was diagnosed with JRA at age 7 and by age 8 my right wrist had completely fused and my left had partially fused. A couple of my fingers have what is referred to as “boutonnièrre deformity.” (I plan to have  another discussion on the word “deformity” another time, it’s coming 😉 ). Over time most of my joints have gotten affected and some look a bit squishy and bony and wonky (very scientific terms, I know ;)).

handsI know a lot of us are self-conscious about the way arthritis has affected our hands and other joints. Maybe it’s because I grew up with my damaged joints, but I have never seen them as that big of a deal. My “deformities” are part of me. They’re my fingers and my hands and my joints and they have been through so much pain already. My poor fused ankle has been through two surgeries and I think it’s an incredibly resilient body part.

If anyone makes fun of your joints, don’t ever allow that to make you feel bad about yourself. Your situation is incredibly unique and your body has been affected by aggressive arthritis. Why should you feel bad about that? If you are scared about people teasing you about your deformities, think about it like this: the people who tease you are likely not people you’d want to be friends with if they’re that unkind. The people who take the time to listen to you and learn about your affected joints are extra-special, so when you find them, make sure you cherish them. 🙂

If you are worried about gentlemen friends freaking out when they go to hold your hands, put those fears to rest. A guy who loves you is going to be happy to hold your hands no matter what they look like. Promise! 🙂

Our Arthritis-affected hands are strong and allow us to write exams, to cook, to drive, to sew and to give hugs. Our affected joints allow us to work, to travel and to care for our families. Let’s give our bodies the credit they deserve. They are fighting a battle every day and they are so strong!

Remember also that having autoimmune arthritis isn’t a typical situation which every person experiences. My JRA has taught me to be stronger and to look beyond physical appearances. It’s also taught me to look beyond what persons may say about my body. At the end of the day, those comments don’t affect how our bodies perform physically. So let’s take pride in our bodies, our strengths and our abilities and love ourselves with our arthritis. Elizabeth of That Girl With Arthritis wrote a very inspiring post about being “Chronically extraordinary” and I have to say I completely agree! 🙂

Let’s keep pushing on with our beautifully strong joints and chronically extraordinary selves. 😉

Readers, how do you feel about your affected joints? What has your condition taught you? Feel free to discuss these questions in the comments or leave advice for those who are still learning to accept their amazingly beautiful bodies.

All the best!

Ms. Rainbow

[Image by pixabay.com]


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Goodbye high-heels/How to feel confident while wearing grandma shoes when you’re not a grandma (or even if you are)

[Disclaimer: Grandmas are beautiful and strong women who often give us strength. This post is not intended to offend anyone who is a grandmother. ;)]

Hi everyone! Today I’m discussing a topic which is often a source of frustration for young women who are growing up with Juvenile Rheumatoid Arthritis and Rheumatoid Arthritis:

High-heels. Whenever I turn on the television I’m flooded with images of women modelling infinite variations of sky-high heels. When I go out to parties it seems that every young woman is decked out in the latest high-heeled style. When I was growing up, even my Barbie doll’s ankles were permanently bent at an angle so she could wear heels. In our society we tend to associate high-heels with sexiness, womanhood and overall female va-va voom, right?

heelsWhen you have Juvenile Rheumatoid Arthritis, however, wearing high heels is sometimes a painful and physically impossible feat (pun intended ;)), as you might have swollen, painful joints which may be damaged or even fused. So how do women (especially young women) feel when they can’t participate in a trend which has become such an integral part of being a woman in our western culture?

As a teen I loved my heels, as painful as they were on my JRA-affected ankles and knees. Wearing heels made me feel good about myself… and also helped me from drowning in crowds of people, as I am not very tall! 🙂 However, by the age of 25 one of my ankles had become so damaged and fused that walking in heels became physically impossible (and painful), so I was forced to say goodbye to my heels. Fashion has had to take a backseat as I now wear flat shoes with lots of support. Sensible shoes have taken the place of fancy strappy heels. I know that when I dress up with flats, my look doesn’t quite have that va-va voom effect that my friends have with their high heels. But it’s okay. I might not have heels to give me that va-va voom effect, so I try to get my va-va voom from the inside. 😉 While they may not be “sexy” to many persons, I am determined to rock my comfy grandma shoes and my grandpa-style loafers. Do you think we can start a new RA-friendly shoe trend, ladies?

I still think heels make a woman look sexy, but now I think that sexiness – true sexiness – comes from the inside, from your personality and who you are. It comes from your confidence as a woman, which in turn comes from how much you love yourself. And unlike heels, that inner sexiness and confidence stays with you always, even when your shoes are off.

My dear beautiful ladies, if you can’t wear heels:

1. Love yourself! Learn to love everything about your unique self. Whether you can wear heels or not should not impact how you feel about yourself on the inside. With or without heels you are still a beautiful woman who has a lot to offer this world – make sure you remember that! Think about the qualities you like about yourself and realize how amazing you are. 😉

2. Do activities you enjoy, such as sports, art, cooking, singing, learning a new language, playing an instrument etc. – whatever makes you happy, go for it. Doing activities we love helps us to feel happier and more confident in our abilities.

3. Realize your skills, strength and unique personality and get your confidence from that. You might not have the confidence booster of wearing heels, but you can show off your beautiful personality and unique talents instead.

4. Rock those grandma shoes! Whatever shoes you’re wearing, wear them confidently. So what if every young woman is wearing heels and towering over you as you showcase your comfortable grandpa-loafers? Be confident in yourself and give those comfy shoes the love they deserve by showing them off proudly!

5. Find cute flat shoes. If you can’t wear heels, that doesn’t mean you can’t look cute and polished. Try looking for comfortable flat boots, ballet flats, loafers or sandals. I found some great fashion tips for ladies who are unable to wear heels in this article from About.com. There are actually many pretty shoes which you can wear if your ankles are weak, although it might take some effort to find them. Check out BarkingDogShoes.com which reviews comfortable shoes for problematic feet. If you find cute flats which don’t offer enough support, try adding insoles for extra comfort. Kiran from The Life of a Porcelain Doll shares some very useful shoe tips for young ladies with JRA in this article.

I know that many young women who have Juvenile Rheumatoid Arthritis struggle between being fashionable and being in pain due to JRA-affected ankles, knees and hips. Remember that shoe styles may come and go, but your personality will always be in. So make sure you show it off. 😉

Readers, feel free to share your shoe stories or recommendations in the comments below!

 

Until next time,

Take care of those feet ladies! 🙂

Ms. Rainbow

 

[Image by pixabay.com]


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Loving yourself with (Juvenile) Rheumatoid Arthritis

girlAlthough (Juvenile) Rheumatoid Arthritis causes internal pain and damage, it can also affect our bodies physically, which can in turn affect how we feel about our bodies as young women.  Apart from causing us to limp and have to use braces, orthopaedic shoes, walking aids or wheelchairs, JRA can destroy joint tissue and affect the growth of our bones, especially when it affects young children whose bodies are still growing. Gaining muscle mass may be difficult when joints are painful and damaged. Scars remain where we’ve had replacements or joint surgery. In addition, medications can have side effects which are seen physically. Methotrexate is known to cause hair to fall out, while corticosteroids are infamous for causing rapid weight gain and a “moon face” and can lead to early osteoporosis in the long-term.

But you know what? JRA or no JRA, we deserve to be loved by ourselves. Do you agree?

JRA (and heavy usage of corticosteroids) has made me a super petite woman. My joints all look a bit wonky and creak-creak-creak like nobody’s business. Growing up, many people would make fun of my body, as I’m sure many of you reading this have experienced yourselves. It hurt and I cried many nights into my pillow over it, but you know what? I still liked my body. I liked my body because I knew for a fact that it was incredibly strong to withstand all that pain. My joints were sick and they were mine and I had to take care of them and love them, just as I took care of my Barbie dolls when their arms and legs broke off and I had to tape them back together. I knew my body was a little different, but it was okay. I was fighting bigger battles and I knew I had to stay focused and take care of myself. In learning to accept JRA into my life, I also learned to let go of other people’s negativity and my self-consciousness and to accept how it was affecting my body.

As I got older, my situation got better. I continued being myself and doing whatever I was passionate about. At college I joined clubs, I danced the nights away with friends and I enjoyed my classes. I was studying English at the time and I was always surprised when guys would lure me into discussions about Shakespeare, even if it was 3am and we were at a party. They respected my opinions, they liked my jokes and they liked me, tiny JRA body and all. They didn’t seem to notice my crooked joints and swollen fingers and super-creaky elbows. Even if they did, they never mentioned it – because in the big picture I realized those things didn’t matter.

I also realized that whether guys found me attractive or not wasn’t something I should worry about. Truly, the opinion which mattered the most was my own. If you love yourself you feel happy, comfortable and at peace and no one can take that away from you. If someone doesn’t find you attractive, so be it. If someone does find you attractive, it’s flattering but that shouldn’t be the validation you need to feel good about your body. Do you agree? Even if you think no one sees beauty in your body, I want you to see the beauty in your body. See the beauty in your body which has experienced hard times but is still trooping along.

You might think that the marks of (J)RA detract from your beauty, but you know what I see when I read through arthritis blogs? I see truly beautiful and strong women who are fighting for their dreams with the cards they’ve been dealt. Elizabeth of The Girl With Arthritis wrote this wonderful piece where she referred to all the physical marks of auto-immune arthritis as our “battle scars.” I couldn’t have put it better myself. When you have JRA you’re fighting a battle every day and sometimes the effects of that battle show on your body. There is absolutely nothing to be ashamed of – if anything, your battle scars show what your body has endured. They are beautiful. So wear them proudly and with your head held high.

I know that when we turn on the television and look at magazines we see image after image of perfectly toned women with sculpted arms and legs – and healthy joints. We hear our friends obsessing about how they’ll have the perfect body once they keep working out. For us, it may seem like we never had a shot at that “perfect” body because of JRA. But you know what? Your body is perfect just the way it is at this very moment – because it’s yours.

Let’s love ourselves ladies. Our bodies are going through a lot – let’s be kind to them and love them, exactly the way they are.

Love your hands, love your joints, love your face even when you’re taking corticosteroids, love your uneven bones, love your hair even when you can’t brush it and love your scars. Love your reliable wheelchair which takes you everywhere you want to go. Love your unique personality, love your strength, love your talents and love your quirks. Before you go seeking love from other persons, first learn to love yourself. You deserve to be loved by yourself. Don’t you think so?

Loving ourselves takes time and is a process. There are still days when I look at my bones and joints and realize how physically fragile they are. It scares me but I try to love them anyway – because they deserve to be loved. If you don’t love yourself already, I want you to start trying. Start learning to love every single thing which makes you who you are.

As women with (J)RA, I think the most important “I love you” we’ll ever say in life is the one we say to ourselves.

So even if it takes time, let’s make sure we learn to say it. 😉

 

Wishing you all the best, pretty ladies 🙂

Ms. Rainbow

[Image source: graphicsfairy.blogspot.com]